Alright, I caved.

I couldn’t take it anymore and started my Zoloft…even though it interacts with two things I take. I opted to just take it as far away from those as possible, and since I’m only on 12.5mg, it couldn’t be that bad, right?

Best decision I ever made.

And something interesting to share about my fatigue: It’s incredibly reduced! My wonky brain chemistry must have been contributing heavily to it, because after about five days I noticed I had a lot more energy. Antidepressants are actually recommended for “chronic fatigue,” and now I understand why! I thought fatigue was only a symptom of depression-related brain chemistry, but it would seem it’s just a symptom of off-kilter serotonin levels in general. My OCD is a lot better. The incessant thoughts are easing and I no longer need to keep hand lotion around from my constant soap use. :\

I take Flagyl Thursday thru Sunday, and usually by Saturday I am exhausted. This Saturday? I exercised. And by exercise I mean my usual stretching routine that I used to do for Fibromyalgia treatment. I got through it all! And the next day I stretched again, but at a reduced level. Today I took a break from it. I’ll see how I feel tomorrow. But I’m in shock that I was able to do that! It’s a very good sign. I’m elated that after five months in Lyme/Mycoplasma treatment, I am starting to get back to things I used to be able to do. I’ve been incredibly blessed to have my family’s support, emotionally and financially, but all I want is to be able to take care of myself again. At the rate I’m going, I think that will happen.

Neurologically, I’ve had a lot more numbness in my limbs. This is healing, right? I get the “hot foot” sensations daily, my feet itch like mad, and.. I remember an instance last week where a sharp, stabbing sensation went through my right leg to the bottom of my foot, and my leg immediately went numb. When the neuropathy was progressing, things got worse, and in new places; this is more akin to old problems flaring up with their last dying effort, so again, here’s hoping this is part of the healing process.

Headache wise, I’ve had what acts like a tension headache for about four days, now. It makes my teeth hurt. I say “acts like” because I never get tension headaches, and I’m not entirely sure if this is one, but based upon descriptions I’ve read… Then again I’ve also heard people describe Lyme headaches like this, so who knows. It could even be the Zoloft or it may be as simple as ibuprofen withdrawal after taking it for several months. Whatever the cause, hopefully it’ll go away, soon. It’s the least of my concerns! :)

a rainbow at night

I’m listening to the crickets chirp.

It’s one of my favourite things to do at night when it’s very quiet. Perhaps because it reminds me of the peace I had at my own home. I would listen to them every night as I fell asleep, the frogs and the crickets, and every morning I’d be awakened by birds chirping outside my window… Now I get that here, too. It’s one of the perks of summer. :)

 

The past week I decided to take a break from social media, Facebook and Twitter and the like. I still updated a little, but I couldn’t keep up with everyone else. I needed a social break. Also lately, in my social frenzy (I like people and interaction, I really do–don’t let the sick-person thing fool you), I realized I was starting to backslide into giving my very precious energy to people who don’t return that concern. It’s something with which I’ve struggled to maintain balance for years. I suppose, because for a small time I was able to be more social than usual, it caught me by surprise when that was no longer the case. I was reminded just where my energy was going–into relationships that were otherwise a one-way street, just me conversing with people who, for the most part, wouldn’t even bother to check on me if I suddenly disappeared. So I needed to back up and regroup, gather my thoughts and focus on what (and who) is important. It all helped.

And I made two great accomplishments this past week!

 

First, I walked inside a supermarket to do my grocery shopping and did not need any mobility assistance! Secondly, I ate a salad without the autonomic neuropathy screwing over its digestion and causing me severe pain later!

I’ve made several milestones this past year, as far as leaving the house. My first trip into an outside building using only my cane instead of being in my wheelchair–just standing up for those few minutes was amazing. My first minor trip inside a real store without needing a mobility scooter to do my shopping (though still earplugs, and sunglasses)–standing up on my own for more than a few minutes, amazing still. Now I’ve done my own grocery shopping, walking around completely on my own, for what must have been half an hour, with only earplugs. Another step in the right direction. :)

I wasn’t able to drive, or stand in the checkout lane, or put up any groceries, but I’m sure that will come later. The following three days (or, the past three days, I should say) have been spent recovering from that excursion. One with M.E. recovers by doing absolutely nothing. I was fortunate to not have too much of a neurological overload (probably because Lyme & co. are being beaten down?) so I was able to watch DVDs to pass much of the time. I went into rest-mode immediately after we returned, but the main start of the crash occurred roughly 24 hours later, very predictably with my legs. I took extra Co Q-10, and L-carnitine, and magnesium, and made sure I got enough protein, and maintained adequate hydration. After a decade with this disease I’m pretty used to coping with what inevitably occurs after so much activity: the muscle relapse and inability to be upright, from an overworked heart muscle and damaged mitochondria. Without all my supplemental intervention I would definitely NOT be at all functional, yet. But I’ve learned a few tricks or two! ;)

As for the salad, well… I love raw vegetables almost more than cooked ones, and I love fresh salads. But for the past several months, while my nerves have been trying to heal with the help of these antibiotics, I could not eat any raw vegetables (or anything high in fiber, for that matter) lest it trigger a neuropathic “episode” of my digestion basically.. stopping. My body would start to digest and then just.. stop. It’s incredibly painful, and something I’ve dealt with sporadically since first starting treatment to kill these infections, but which progressed pretty far before any substantial bug-eradication could be done. I’m not sure what the exact specific name for it is (I’m assuming something along the lines of gastroparesis, yes?) but it lasts for hours and I have to break out the caffeine to jump-start my nervous system and get things digesting my food again. :\ (Silly vagus nerve, either causing things to do too much or too little.) Needless to say I’ve been avoiding that horrible scenario… Until today. I thought enough time had passed to at least attempt some veggies. So I ate a salad…and everything went as normal! It was amazing. I’m hoping I can get back to my usual pre-neuropathic diet, or at least incorporate more of the things I truly enjoy eating.

 

As far as peripheral neuropathy goes: Much better! I can wear normal clothes again, for instance. And as far as the asthma flare up: My cough is now gone completely. :) My eyes have also been better, hence me being able to watch DVDs a lot. However, I did have a headache flare up last weekend, probably because I always get a flare up (Lyme or Mycoplasma, it’s anyone’s guess at this point) around the start of the month. I also had several days worth of migraine attacks (with horrendous postdrome) because I didn’t realize soon enough that something I was eating repeatedly had sucralose/Splenda in it. Erm… Some number of days ago I had a hive again. Any nick or cut I acquire refuses to clot for a long time, but with being on ibuprofen 2-3 times a day for the past two months, I guess that’s to be expected. My inflammation must be in a down phase, because I only have to take one ibuprofen per day right now. :) Probably because of the more-advanced anti-inflammatory (corticosteroid) I’ve had to take in the form of Dulera… Oh, and the urinaylsis came back normal, but we expected that much, right?

One thing I do wish I could start is my Zoloft, because my OCD is borderline raging recently, from so many months not taking anything for it. I am on so many prescriptions right now that I cannot bear the thought of adding something else. I have never been on so many prescriptions at once in my life! I’m trying to keep in mind that this is just a temporary thing, to help get me through this phase of treatment…

That’s all for now. It was nice to summarize my improvements for a change. :)

 

a rainbow at night

Letting go of society’s expectations, symptom recaps, and improvement with bartonella.

Despite the fact that my brain has been functioning a lot better recently, I haven’t much felt like updating. Completely the opposite of several weeks back, when I couldn’t think to save my soul but desperately had things to say! I’m learning a new language, so most of my spare brain energy has been going into that. It will also help me decide if I may be able to attempt finishing my degree come next August. If I cannot, however, I think I’d be okay with just letting it go. Afterall, I do have at least one degree–even if it’s not what I set out for–and my health is too precious to waste on going to university to finish a degree I may never be able to use, and which may worsen me trying to complete.
I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. If I do reach the point where I am finally stable, then I would love to try and finish and become a researcher, or at the very least, a counselor. But that would take a lot of trust in the fact that I’d still be stable and healthy enough to actually do those things after my degree was finished. If I never again become that well, wouldn’t it be better to attempt some type of small job with the degree I already have, than use up everything I’ve gained in pursuit of something that won’t do me any good? But even that would require more health than making sure I don’t starve on my own. If I only improve enough to take care of my basic needs, I will be thankful.

Illness has taught me my worth is not defined by how much money I make, or what level of degree I have, or what job I have (if any, if ever). I am worthy because I am here, because I exist.

Randomly: I’ve gotten several followers the past few weeks from all over the world–oh, the power of the internet is amazing!

Okay, let’s see. From the 16th-23rd I was having a typical Lyme flare… How is it possible that this pattern hasn’t changed, practically since the time I got it? Is it really THAT predictable? But yes, severe headache and neuropathy issues, and I also recall being more cognitively impaired during then, as well as thirsty–again, all typical. What’s not-so-typical is that I’ve had nasal allergies the past week. I can’t tell if it’s eosinophilia related (hopefully not) or something I’m exposed to in my environment. It’s not like I go outside or even open the windows lately, with it being so cold, but either way, since I’m not allergic to anything except chamomile, this is puzzling! I’m definitely reacting to something–I just don’t know if it’s internal or external. I have Astelin, until I figure out what’s going on.

I felt it’d be okay to restart my stretching routine a couple weeks ago, so every other day I get some exercise! No relapse, yet. I’ve been able to cook a lot lately, also, which is encouraging. It’s still difficult and frustrating because of my muscles and their tendency to fail the day after using them, but hopefully that will improve more soon. If it got worse when I got these infections, surely it will improve as I continue to treat them.

Dare I say that the bartonella eradication is going as planned? The Bactrim is amazing, and I think the bart is.. well, it might be gone, or at least, finally beat into submission?! The protocol is to continue treatment two months past the cessation of symptoms, and I talk to my Lyme specialist next month, so we’ll see what he says. Then I can start Tindamax to finally treat the Lyme! The antibiotics I’m on now treat it, but only very minorly–just enough to keep it from taking over. I’ll be stopping the Rifampin since I can’t take it with Tindamax, but I may stay on a maintanence dose of the Bactrim, since bartonella has a crazy-high rate of relapse, and I do not want to go through this again. I feel I’m probably being unrealistic that I should never face it again, with the way my immune system is, but… For now I’d really like to enjoy my improvement.

Three days ago I started my Zoloft to ward off PMDD and control any outstanding OCD symptoms. I don’t think I was having PMDD yet, but since I was supposed to have taken it again in September, it’s bound to show up soon. My OCD has been flaring and I’ve been hungry all the time, so I know some brain chemicals were out of alignment. I last took it in June, I think, and it was by far too late then!

The past three weeks I’ve had this odd collection of symptoms that fit the description of pelvic floor dysfunction–not saying I have that, but symptom wise, that’s what’s going on. All of my muscles there would randomly tense and were very uncoordinated, no doubt the result of nervous system disruption. :\ I have gotten this on and off over the years, for a day or two at a time, but never three weeks. It’s mostly gone away now. My menses started two days ago so they’re somewhat on schedule again, with every 45 days being my usual. However, if things continue to be.. bizarre, I may see myself going to yet another doctor, so it’s worth keeping track of, yes? I’ve been slightly anemic even before this, and yesterday I had the most random craving for crushed ice (a further sign), so it’s probably no wonder I have been beyond exhausted and out of breath with every move I make. (Anyone else start singing The Police just then? No? Okay.)

A recent study found a correlation between high doses of Vitamin C and a reduction in the rate/increase of heart failure symptoms. Granted it’s just a correlation, but now I feel even greater about taking two tablets per day since last year!

Til next time

a rainbow at night

Lyme flare recap, pictures, and a small rant

I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.

This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.

Otherwise,I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…

Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.

Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!

I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!

Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)

Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!


Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!

Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!

It took so long to get a good shot of her–I eventually had to put the camera on the ground!

If you rememeber me briefly mentioning Zoya Nail Polish in my first video post, I believe I was wearing Yummy. I recently applied it again (just one coat, though) and thought I’d share. I’d like to start encorporating more of my “real life” in this blog (things that don’t revolve around symptoms and disease advocacy) as hopefully, with my improvement, I’ll have more of that to share.

There’s still a health-related hook, though. The main reason I love Zoya–beside the fact that they are free of dangerous chemicals, particularly camphor, whose toxicity can be inhaled–is that the application lasts so long. No more chipping in just a day or two, ladies (and the occasional fellow); with Zoya I can use two quick coats and have it last all week. It’s become a ritual of mine that helps brighten my mood and my self esteem. If I cannot do it myself, a family member will help me, but every Friday night I redo my nails, as I briefly mentioned long ago in my How to Deal with a Bad Day post. :)

And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a  coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.

I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.

Until next time!

a rainbow at night

As of June.

So, my menses began yesterday, and with it usually brings the resolution of my mental crises during months of PMDD. Of course I’m also on my Zoloft, so basically, I’m good now!

It’s amazing how much such a minute chemical imbalance can screw up everything else in your body.

Disorder Rating
Paranoid: Low
Schizoid: Low
Schizotypal: High
Antisocial: Low
Borderline: Low
Histrionic: Low
Narcissistic: Moderate
Avoidant: Moderate
Dependent: Low
Obsessive-Compulsive: High

Personality Disorder Test
Personality Disorder Information

(For the record, I do have OCD… I think I keep scoring moderate on Narcissism because I don’t like working with others, because I’m convinced they’ll mess it up, haha!)

My Lyme flare should be coming up… If the previous two months are anything to go by, I’ll be 95% bedbound and feeling nearly disconnected from my body from feeling so weak. I really hope that doesn’t happen this month, but if it does, I’ll pet (or stab) my new Lyme disease plush (that two friends bought me, aww!) and keep in mind that I only feel so bad because the buggers are dying. I’m experiencing worse arm weakness today, though I did use them a lot yesterday, I’m seeing a pattern: The middle of the month is worse for it. Which makes sense, since this symptom did get much more extreme when the infections came about. Today and tomorrow might also be a bartonella flare, which would explain me waking up with this terrible headache. I’m unsure, but if my last flare was Friday… If I’m insanely moody and/or start having muscle spasms, we’ll know.

Oh, and Monday we mailed off my bloodwork to IGeneX! In about two weeks I should have the results of that.

And that’s all for now, world! I hope you all are being the best you can, given whatever circumstances effect you.

a rainbow at night

My old nemesis, PMDD!

…I can’t mentally cope with all the things that are happening with XMRV. There are lots of people/blogs dealing with that, so you can visit them, if you want commentary. Just know that I’m not surprised in the least, and right now I think people who ARE surprised have forgotten what kind of a world we live in…

But yes, for the past week I’ve had.. well, first off, NOT a Lyme flare up! :) But, I have been having another type of “flare up,” if you will, of something I’ve dealt with for the past ten years: Premenstrual Dysphoric Disorder (PMDD). And no, it’s not just extra-difficult PMS (at least not if you ask me). Sometimes it feels more like a mild form of psychosis (sans hallucinations) than a type of dysphoria. It destroys your perception of what is actually going on around you. It can be strong enough to make you want to commit suicide. It occurs two weeks before menstruation, and then when menstruation begins, the PMDD symptoms go away. For me, I don’t find PMDD to be that similar to PMS, but everyone is different. As far as I’m aware, no one has come up with a way to cure it, yet, or even know what causes it; in 2007 there was talk of a genetic predisposition. There is also a lot of talk about exercise and diet making it better, but diet and exercise make nearly any condition better; it’s not enough to make the difference between suicidal and not suicidal. It sounds to me like the usual “we don’t understand it or think it’s real, so just get outside more and you’ll be okay.” One of my psychology professors in university thought it was just a made-up term for people who wanted more attention.

Premenstrual Dysphoric Disorder (my symptoms in bold)

  • feelings of deep sadness or despair, possible suicide ideation
  • feelings of tension or anxiety
  • increased sensitivity to rejection or criticism
  • panic attacks
  • mood swings, crying
  • lasting irritability or anger, increased interpersonal conflicts; typically sufferers are unaware of the impact they have on those close to them
  • apathy or disinterest in daily activities and relationships
  • difficulty concentrating
  • fatigue
  • food cravings or binge eating
  • hypersomnia, sleeping more than usual; or (in a smaller group of sufferers), insomnia, being unable to sleep
  • feeling overwhelmed or feelings of being out of control
  • increase or decrease in sex drive
  • increased need for emotional closeness

My main fix is Zoloft. (And having M.E., a very, very small dose of Zoloft.) I usually take it for two weeks at a time, every three months, and I haven’t had PMDD in two years because of this; it resets my brain chemistry so it doesn’t fall off kilter whenever a trigger like hormone fluctuations comes along. But after getting all the migraines, having to start Topamax, and being unable to have caffeine, that left only Treximet to treat the migraines that were still popping up, and you cannot take antidepressants with Treximet. So I haven’t been able to take any preventative Zoloft since.. January, while I waited to see how long things would take to stabilize the Migraine part. I’m not frequently getting them anymore, so I started my Zoloft this morning. Within three or four days, I’ll be much better.

Yesterday I had a bartonella flare up on top of all the PMDD madness, so I was a complete emotional wreck. (Fever of 99.5 which was probably a regular 99.2 but your temp elevates slightly before your menses.) Life wasn’t helping. Thankfully, today is here! But last night I decided to take one of those online psychiatric evalutation-type tests that I’ve played with over the years. My results were pretty shocking!

Disorder Rating
Paranoid: Very High
Schizoid: High
Schizotypal: Very High
Antisocial: Low
Borderline: Moderate
Histrionic: Moderate
Narcissistic: High
Avoidant: Very High
Dependent: High
Obsessive-Compulsive: High

Personality Disorder Test
Personality Disorder Information

I know what my usual results are, and they are not that. So, in case you needed a visual of what PMDD (and bartonella) can do, there you go. They can take someone perfectly sane, and turn them into that.

a rainbow at night

This means it’s dying, right?

Today has been quite a trip.

The soles of my feet are sore. My eyes are sore. My hunger is poor. My back is spasming, forcing me to “play off” why I’m randomly screaming. I’m wrought by tremors, and I’m angry. Not at anyone or anything in particular, just your usual, run-of-the-mill, spontaneous fits of bart rage. At this rate I’m going to have one killer headache tonight…

The best part of the day was channeling whatever faux-energy aroused by my anger into a bath. A real bath, in a bathtub.

Need I mention again, Zoloft definitely doesn’t work for this type of emotional instability? I guess I can start weaning back off of it, now.

Annnnd I just realized I unfollowed someone on Twitter for no good reason. How sweet I am!

[Edit: I also have a "fun" temperature of 99.5... That's normal for 11pm, sure.]

A heart just doesn’t seem appropriate for my signature, so…

a rainbow at night

This is me trying to make a post… A make-up post!

Ahhh I’m sorry, I really have been around (i.e., on the computer), but I’m only capable of throwing out whatever words are currently floating around in my brain. My symptom chart consists of one-word descriptions, you know, and a blog entry… Well. That takes more. But I figure I’ll just wing it.

Let’s see… This is day six on the Rifampin. Good news is, I’m herxing! The bad news is, well, I’m herxing. It’s not comfortable but at least I had an idea of what might happen. It’s made things easier, and of course there are always pills… I also decided to STAY ON my Zoloft for the off-chance that it might actually help. I’m not sure if it has. On my “bad” days I just alternate between exceptionally-stable to exceptionally-unstable. Aha.

The most profound thing has been that 30-60 minutes after my antibiotic dose, I can no longer walk. This is a bit different from my usual wheelchair-dependent state where I can at least walk a few feet and sit down on the couch, and use the chair to help me get back or whathaveyou. This is more along the lines of, I must wheel myself to the door of the restroom, and I’m afraid I may fall during the short “dash” inside, even while I’m holding on to things. (My transport chair may be small and maneuverable but it’s near-impossible to fit through that particular doorway; grr.) So I’m effectively wheelchair-bound for the twelve hours following antibiotic administration. Late at night my ability to stand for a couple of minutes at a time gradually returns.

Other things that happen after my dose are:

  • A few hours later, I get tremors and various types of uncontrolled neurological happenings: Sometimes the dystonia becomes worse, sometimes my muscles will twitch everywhere, sometimes even my Tourette’s starts to act up.
  • About six hours later, the head pain starts. It’s like a throbbing-brain sensation and my eyes are very much affected. A few nights I’ve gotten through it, the others required Lortab and ibuprofen.
  • Both of these things also happened on the Doxycycline, but at a much more extreme degree.

Need I say more about how glad I am that we took the “get the bart levels down first” route?

As to be expected, my moods have been more volatile. I’ve noticed when I wake up, I am very snappy and irritable and that.. is not like me at all. (Despite waking up feeling sick, I’m honestly not one of those people who wake up in a bad mood.) I’m dealing pretty well with those sorts of things, though! A couple of times I’ve suddenly told friends “I’ll talk later” to avoid yelling or snapping at them for no reason, but the fact that I’ve had enough awareness to do that, is great. :)

I haven’t gotten much depersonalization yet, but the derealization is getting more frequent and I.. wow, I hate that so much. It’s like you’re dreaming and you can’t wake up; you can’t understand why anyone is saying the things they are; you don’t understand why you’re doing any activity… Luckily, like the moods, it comes in “episodes” and I haven’t had a full day of it. (This is how the bart usually acts, anyway–relatively short “episodes” of altered mental status in comparison to just waking up and being in a daze all the time–so I guess it makes sense that the herxing is like that, as well.)

Other things that have happened are.. well, I really need to make it a point to say, again, that my legs are ridiculously more weak than my arms! That baffles me. I guess because I’m used to thinking of my weakness in M.E.-terms, which is more akin to someone who has Myasthenia Gravis: Whatever you use the most will be affected the most, and your actions are directly related to your muscle function. But with this, that doesn’t matter. Basically I’m just not used to having weakness that isn’t relative to something I’ve done. And while the majority of my leg weakness has previously been neurological, this weakness affects my muscles, as well. So it’s just something new to cope with… I think I’m doing fine with it, though. The first couple of days I went to get up to shuffle to the restroom and nearly went to the floor (ha!), but I’m pleased to announce I remember that my legs aren’t completely functional, now! (I can’t help but laugh; really, how do you forget something like that?) And if I recall, the weakness was a part of my last herxing, so, right.

That said–and coupled with the long break I took from the computer the week before–I’m able to type a lot more recently. :) Which is very “convenient” (i.e., a blessing), because I’ve obviously been spending more time online. Usually, I go sit on the couch for half an hour per day, collectively. I also make at least one trip to my mother’s room at the other side of the house. I’m adventurous like that, you know. For right now those things don’t happen, though I am able to wheel through the house a few times per day, if only to say hi to everyone, see my puppy, and “get some air.” I opened the front door today, and felt the outdoors, and it was nice. But because of the new fatigue and types of weakness, it’s more or less in my best interest to just stay in one spot and not move that often. Lest I anger the headache gods, or upset whatever semblance of normal my blood pressure has maintained.

Another thing I’ve felt recently: Sick. Not really “you have a neurological disease” sick, but “you have an infection and now your body is trying to kill it” sick. You know the feeling: Fever, feeling “clammy,” bouts of dizziness and motion sickness, joint pains and sore muscles, attacks of nausea. Just general sick. Nothing new, but for the sake of mentioning it…

Today I woke up mildly dehydrated, but–and here’s the kicker–NOT to the point of requiring immediate intervention! :) That’s a great thing. I’m in Lyme flare mode right now, so perhaps that’s why I woke up like that. My cognition is poor (but never underestimate the power of the ramble!), my neck is stiff and hurting,  I’m having palpitations (though because of the Lyme, the mild dehydration, or both, I’m unsure), my arms have been going intermittently numb, and yesterday I actually woke up with some more-difficult-than-normal arm weakness. The POTS symptoms are a little angry, but again, dehydration is not my friend.

Well then! Right now my vision is rather blurry so that’s probably my cue to end this entry. I think that about covers everything. :)

a rainbow at night

Lortab, outings, and strange temperature flucuations

Yesterday our goal was to make it out of the house to take me grocery shopping. I managed to get dressed, so off we went! But when we got there, all the mobile scooters were either taken, or charging and not available for use yet. So mum came up with the idea that she would push me in my shiny red wheelchair, while my niece Nikki would push the shopping cart alongside us. And together we roamed around for about an hour, collecting my shopping list. We actually had fun doing this, which was amazing. We made it a family affair, and it was just.. nice.

When we originally left, I didn’t think I was going to make it. My heart symptoms are worse and thus I couldn’t breathe well without said pressure in my chest, and.. it wasn’t looking good for me staying upright. =\ But THEN I found half of a Lortab in my purse! And so I took it, and was able to “go shopping.” (Granted I’ve been on Vicodin for four days now because of that persisting severe headache, but yesterday it was mostly gone.) I’m sure I’ve mentioned before, but hydrocodone has this additional effect of giving me more energy and better cognitive ability. I’m always amazed at how much half a pill can work at improving my overall level of sickness, and I’m not sure what it was doing in my purse, but I was so glad it was there! It took about half an hour to work, and then I was able to sit up, and breathe, and think, and.. function. Incredible. I stayed in the car while Mum went into the other places for me–post office, pharmacy, discount store–and by the time we arrived at the grocery store, I was ready. (This effect that hydrocodone has on me is what makes me eager to try Low Dose Naltrexone, which also binds to the opioid receptors.)

Truth be told it would have been smarter yesterday to not override my body’s signals, and go back home, because now I have to pay the consequences, but… It’s not my fault that everything I do comes with payback. I don’t have the option of pushing myself 99% of the time, unless it’s due to medicinal intervention like hydrocodone or caffeine. And everytime I use one of those, I have to pay extra for it. But really, sometimes you just have to pay the consequences, lest I’d never get to do anything. I’d never shop or get to the doctor or be able to take a bath… That’s just how it is. I consider myself lucky that I am able to recover from it, instead of being at a level where every trip out of the house would incapacitate me for the next few months. And honestly, if I didn’t have my medicine (olive leaf extract, ubiquinol, l-carnitine), I know I’d be at that level. A couple of months without the OLE, and a week off of the co q-10/ubiquinol, taught me exactly how much I depend on them…

So after the trip, on the way back home, something odd happened, that hasn’t happened in about two years. My temperature dropped to 97.8°F; I was freezing. My temperature goes up and down between high-98 and low-99’s, but it hardly ever drops into the 97’s in the middle of the day. About six hours later, it went back up to 98.6°F, and then half an hour after that, down to a normal 98.2°F… This morning I woke up at 7am, took my temperature, and it was 97.1°F. I took it again when I woke up at 1pm, and it was a normal 98.6°F, where it’s been most of the day with mild (normal!) fluctuations. The last time this happened was also after a shopping incident, so I can only assume this occured because of the forced exertion (or rather, me overiding whatever level of sickness I was at before taking the hydrocodone).

Also for the record I am now on my 12.5mg dose of Zoloft to control the OCD and PMDD. This was started on the 1st.

I think I got a migraine last night, but because of my other headache, I didn’t notice that’s what it was until much later. But I had such typical migraine symptoms! Right-sided pain and facial numbness… I don’t know how I didn’t realize what was going on! (Ironically, last time I was in Walmart I got a migraine, too. And the time before that, as well. And every time I go in there my nose starts to run, no matter what season it is. I wonder if that’s significant? I hope I’m not developing some sensitivity to the place. But anyway…) Not paying attention and thinking it was just my other severe headache (which is still trying to go away completely), I took pain meds for that… But of course it was a migraine so they weren’t very effective! They helped me cope, but did nothing to actually alleviate it. When I woke up “this morning” I finally realized where I’d gone wrong, and lucky for me I was able to take migraine meds and they still worked to get rid of it. In the past I’ve had terrible luck with stopping migraines after they’ve begun, so this really was quick lucky!

Ah, and that’s enough typing for me today. I need to be preparing for whatever sort of crash I may get after yesterday.

a rainbow at night